CANCER-RELATED FATIGUE

Cancer-related fatigue

Everyone feels tired from time to time. This is perfectly normal, especially when tiredness has an identifiable cause such as being busy at school or work or after extensive exercise. Compared to normal tiredness, fatigue is much worse and not relieved by rest.

Childhood cancer and its treatment can cause fatigue (this is called cancer-related fatigue). Usually cancer-related fatigue gets better after treatment finishes, but sometimes it lasts for many months or even years. When you constantly feel fatigued and it does not get better with rest, this can have a big impact on your daily life and emotional wellbeing.

Am I at higher risk of cancer-related fatigue?

Anyone, including people who have never had cancer treatment, may develop fatigue. The difference with cancer-related fatigue is of course it only occurs to people after a diagnosis with cancer.

The following factors may increase the risk or severity of cancer-related fatigue:

  • Psychological distress
  • Late effects of childhood cancer or treatment
  • Radiotherapy
  • Other health problems such as pain
  • Cancer relapse or a new cancer diagnosis
  • Getting older

You can find out if you have received radiotherapy by looking at your treatment summary. If you do not have a treatment summary or if you have any questions, do contact your treating hospital.

If you experience fatigue, it does not always mean that this is caused by your cancer or its treatment. Fatigue may have other causes. It is often difficult to distinguish ‘normal’ fatigue from cancer-related fatigue.

What are the symptoms and signs of cancer-related fatigue?

There are symptoms and signs that may suggest you could be experiencing cancer-related fatigue. You might not have these symptoms and signs at the moment, but it is important to be aware of them in case they may develop in the future.

These symptoms and signs may suggest that you experience fatigue:

  • Tiredness or exhaustion without identifiable cause
  • Feeling like you have no energy or strength
  • Difficulty doing simple things, such as brushing your hair or getting dressed
  • Reduced motivation
  • Difficulty concentrating and remembering things
  • Difficulty sleeping (insomnia)
  • Losing interest in sex
  • Feeling anxious, depressed or moody
  • Finding it hard to make decisions
  • Appetite loss or overeating

Usually these symptoms are temporary and will usually go away after plenty of rest. However, if you experience any of these symptoms or signs for a longer time period please see a general practitioner or follow-up care specialist.

I am at higher risk of cancer-related fatigue. What tests should I have and when?

Whenever you visit your follow-up care specialist, they may:

  • Ask whether you have been experiencing any symptoms and/or signs of cancer-related fatigue

If you feel you may have cancer-related fatigue, it is advised to speak to your general practitioner or follow-up specialist. They may ask about your lifestyle, your feelings of tiredness and exhaustion. They may also screen for underlying medical conditions that may cause fatigue such as anaemia, sleep disorder, or underactive thyroid (hypothyroidism).

What happens if I have cancer-related fatigue?

If you experience cancer-related fatigue, your follow-up care specialist or general practitioner will probably refer you to a specialist. Depending on the symptoms and/or signs you experience, you may be referred to a:

  • Specialist in fatigue (if available)
  • A more generic specialist such as
    • Psychologist (healthcare professional specialised in mental health)
    • Physiotherapist (healthcare professional specialised in exercise)
    • Counsellor (professional specialised in provides guidance and advice)

The specialist may discuss different options with you such as education programmes about cancer-related fatigue, physical exercise, adventure-based training, cognitive behavioural therapy, relaxation or mindfulness.

What else can I do?

Experiencing cancer-related fatigue can be difficult. Talking to friends and family can be helpful as well as specialist counselling and/or contact with support groups, such as patient organisations. For more information on taking care of your mental health, please read: Mental health problems.

Although it may not influence cancer-related fatigue, it is still important to live a healthy lifestyle. Taking care of your mental health may be beneficial; even small changes to your lifestyle can have a positive impact on both your physical and mental health. For more information on taking up a healthier lifestyle, please read: Health promotion.

It is important that you are aware of the possibility of developing cancer-related fatigue and that you know the symptoms and signs. If you have any further questions or the information in this brochure worries you, please contact your general practitioner or follow-up care specialist.

Where can I find more information?

You may find more information about (cancer-related) fatigue online. However, it is important to be aware that this information is not always up to date or accurate.

Some sources of further information are:

  • NHS inform: Here you can find more information about managing cancer-related fatigue
  • American Cancer Society: Here you can find more information about cancer-related fatigue in general

On this website, you can also find more information related to this topic:

Please note

This PLAIN summary is based on the PanCareFollowUp guideline for “Cancer-related fatigue” [1], which is itself based on the corresponding IGHG* guideline [2].

While the PanCare PLAIN information group strives to provide accurate and complete information that is up-to-date as of the date of publication, you can check with your general practitioner or follow-up care specialist if this summary reflects the most up-to-date information available and whether it is relevant for you.

Please do not rely solely on this information. It is best to also seek the advice of a qualified medical practitioner if you have questions regarding a specific medical condition, disease, diagnosis or symptom.

No warranty or representation, expressed or implied, is made concerning the accuracy, reliability, completeness, relevance, or timeliness of this information. PanCare has produced the English version and PanCare is not responsible for the translated versions of this summary.

*International Guideline Harmonization Group for Late Effects of Childhood Cancer

[1] van Kalsbeek, R. et al. (2021) European PANCAREFOLLOWUP recommendations for surveillance of late effects of childhood, adolescent, and Young Adult Cancer, European journal of cancer. Available at: https://www.ejcancer.com/article/S0959-8049(21)00368-3/fulltext

[2] Christen, S. et al. (2020) Recommendations for the surveillance of cancer-related fatigue in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Available at: https://link.springer.com/article/10.1007/s11764-020-00904-9